Welcome

Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

Author
Topic: More bone questions (Read 10769 times)

I've already sent my ID doctor an email with my concerns but I wonder how much knowledge I can ascertain in the mean time. I'm thinking there has to be an underlying issues with my skeletal system especially since my foot hasn't healed yet.

I had the little fall on the stairs that caused a broken wrist and when I went to the new ortho doctor, I discovered I also had a broken toe. I had stubbed it lightly but wasn't too concerned. It became discolored but there wasn't much pain as I still don't have feeeling in that entire area of my foot.

It just seems like my bones are not holding up very well. Last week I broke a piece of tooth just from flossing.

I added calcium a couple of months ago to my diet along with a multi vitamin and fish oil.

Another issue that I've never really wished to discuss here before is the whole dieting thing. Let's just say I've always had issues there and during stressful times, it manifests again. I've focused on eating everyday and not starving. I pretty much know this had to contribute to my issues and have tried to address it.

This past week has just left me in an extremely annoyed state of mind.

Another issue that I've never really wished to discuss here before is the whole dieting thing. Let's just say I've always had issues there and during stressful times, it manifests again. I've focused on eating everyday and not starving. I pretty much know this had to contribute to my issues and have tried to address it.

Could you clarify this a bit? Im not following this part about dieting issues ^

Also Like P mentions you need to have your D levels checked if you havent yet. You actually said you were going to do this backwhen I brought it up during your broken leg thingy. Write it down so you don't forget at your next doctors visit. Im surprised none of them have suggested this yet given all the breaks and stuff. My doc checks VitD levels yearly, and a few months ago she found my Vit D levels low so she prescribed me the high dose Vit D.

Could you clarify this a bit? Im not following this part about dieting issues ^

I think wolfie may be referring to studies that show HIV patients that are on the thin side have more bone issues than the plump girls. I think he's previously stated that in his attempt not to be overweight and have issues with lipids and other things connected with that he's focused, perhaps to his detriment, on being less heavy.

Of course, one need not be one or the other -- "normal" weight for one's height is a fairly large span depending on one's natural body build (ecto vs. endomorph), but my physician prefers that I be on the upper side of "normal" instead of the lower side due to my past history of not being able to keep weight on.

I just went through all my labs and there's no results listed for Vitamin D. Just calcium levels which are within normal ranges. The surgeon's report indicates there's marked osteopenia in my foot, but I believe that would be normal due to non use.

My doctor is ordering a dexa scan, but I've not rec'd the referral yet.

The reason I mention the extreme dieting is that I'm researching how much that affects the skeletal system long term.

Wow MissP, awesome recall. I forgot about having balance issues and all the falls that I had before my bad injury in September. I referred to it as jelly leg as it would just give out for no reason that was obvious. I would be walking along and it would just give out for no reason.

Wow MissP, awesome recall. I forgot about having balance issues and all the falls that I had before my bad injury in September. I referred to it as jelly leg as it would just give out for no reason that was obvious. I would be walking along and it would just give out for no reason.

That happened 4 - 5 times over several months.

Well, if it was me I'd sort that out in addition to the bone issue/dexa scan. You shouldn't be having this many falls. Once or twice it's an accident. More than that it's something else.

The only thing that can be done for a broken toe is to tape the broken one to the toe next to it. I've broken several of my toes throughout the years and haven't done anything for them. I've never sought medical attention either, knowing the limited treatment for that.

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I just went through all my labs and there's no results listed for Vitamin D.

I get checked for vitamin D, but I believe its not a part of the normal tests. Since I had a problem with low vitamin D, they check me twice a year. Request your doctor to check for it.

Also, ever since I have been in the VA healthcare, ( and Prior) on each visit, the doctor ask me if I had fallen or have balance issues, since the last visit, and how many times. This is a normal routine question, each time, every visit. They never fail to ask this,.. Oddly enough, the VA also ask me if I smoke @ each appointment. I haven't smoked in years.

I forgot to mention the results of the MRI. The prior diagnosis was a Lisfranc Injury and I needlessly worried and researched endlessly to find out that wasn't my situation. The continued swelling and pain is most likely due to a neuroma of the nerve that runs along the ankle.

That is actually good news as that would have required additional surgery.

Guess it's time to take my own repeated advice and insist my doctor address the underlying issues that's causing such easy fractures. I wrongly assumed since my calcium levels were OK, that my vitamin D levels were too.

I only recently added calcium and multivitamin supplements to my daily regimen and the lable indicates that it provides 100% of the RDA for vitamin D.

glad to hear no Lisfranc injury but what did the doc say about what you should be expecting for recovery time?are you still unable to put weight on it?still swollen?no need to apologize.i think i would be going a bit nuts (more nuts anyway) if i had to deal with this for that length of time!

glad to hear no Lisfranc injury but what did the doc say about what you should be expecting for recovery time?are you still unable to put weight on it?still swollen?no need to apologize.i think i would be going a bit nuts (more nuts anyway) if i had to deal with this for that length of time!

Thanks Mitchy. I can walk on it, just not correctly. After about a 1/2 mile, my knees and hips ache from the incorrect way I'm walking. I can also expect my foot to be beet red and swollen to twice its size by the time I return home. The range of motion is great though as I can ride my bike for hours without issue.

The surgeon thinks that removing the plate will ease some of the pressure on the compressed nerve. Again, another comment about having skinny legs causing the nerve to already being close to the bone anyways.

Thanks Mitchy. I can walk on it, just not correctly. After about a 1/2 mile, my knees and hips ache from the incorrect way I'm walking. I can also expect my foot to be beet red and swollen to twice its size by the time I return home. The range of motion is great though as I can ride my bike for hours without issue.

The surgeon thinks that removing the plate will ease some of the pressure on the compressed nerve. Again, another comment about having skinny legs causing the nerve to already being close to the bone anyways.

so, when does the plate get removed?does he expect you to have a full recovery?when?

so, when does the plate get removed?does he expect you to have a full recovery?when?

He indicates that it's my choice when to have it done. I can have it removed immediately or wait indefinitely.

On a GREAT NOTE: I decided to return to work this weekend. I took a couple of pre-emptive pain pills and dealt with the horrid pain. I awoke the next morning sorer than hell and dreaded working that evening. A few hours into my shift, the pain was suddenly gone!!!! I have since been walking like crazy and I barely have a limp.

I hadn't completely realized how fucking depressed this entire episode made me. I was about to explode waiting on this to heal.

Now I can focus on finding the underlying causes of all the bone issues and balance/falling stuff.

On a somewhat funny note, I fell flat on my bony ass yesterday. I had been sprinkling talcum powder in my shoes and socks. As I stood up to put everything away and being shod in socks, it was like hitting a patch of black ice. Powder on hardwood floors is extremely slippery. I've been doing this for decades and never had this happen before.

Did I ever share my wine snob friends story? Oh well, will share it again. We had friends who always brought their own wine because they didn't like my cheap white zin or my boxed wine. After one of their visits, I saved the bottle and filled it boxed wine. A few nights later, I presented like I was uncorking an expensive bottle of their wine.

As we sat there enjoying it, Andy commented "Now isn't this much better than that cheap shit"? I agreed and smiled broadly the rest of the evening.

I had a major observation this morning that might shed some light on the balance/falling issues. It happened again this morning after walking a few step to the restroom. I noticed that I kinda went dizzy and blank for a brief moment before it happened. Luckily, I was able to catch myself using the counter as balance.

I've recalled that on each occasion that I fell, I had just stood up. I guess I never considered that I may still be having heart issues. I've not discussed this with my cardiologist yet, but think it might be worth exploring further. It might be possible that I'm experiencing sudden drops in blood pressure. In the meantime, I'll be standing up slower.

Thanks, I definitely will. I had severe hypotension in highschool and thought I had pretty much normaled out. If I remember correctly, during that period I had one BP reading that was around 70/30. Don't know why I didn't think of this possible connection before.

Well, I've finally decided to have the plate and screws removed. I just don't see my walking/running abilities getting better. Might as well have it done while we have crappy weather. My pre-op appointment is April 2nd.

Well, I've finally decided to have the plate and screws removed. I just don't see my walking/running abilities getting better. Might as well have it done while we have crappy weather. My pre-op appointment is April 2nd.

Wow ... I had a little sympathy pain for you when I read this . Mr Wolfe , you are one determinded brave man and my hat is off to you . Should I wish you luck or say break a leg ? . I'm going to go with best of luck .

Wow ... I had a little sympathy pain for you when I read this . Mr Wolfe , you are one determinded brave man and my hat is off to you . Should I wish you luck or say break a leg ? . I'm going to go with best of luck .

I'm surprised I'm still getting responses as I'd have thought people were tired of hearing about this. I was loosing the mental battle for a while, but have become a determined individual again. That's a different subject though...even though I have a couple of threads going.

There are a whole lot of positive changes going on. Some difficult, some easy. I've decided to once again take charge and be in charge. I've been agonizing over quite a few issues and have made stedfast decisions. Haven't necesarily made others happy...but my PMA is back. I'll make another thread someday soon...I hope.

My doctor finally ordered a Dexascan and I have an appointment next Tuesday. He also ordered additional labs to check my calcium and Vit D levels. I postponed the removal of the plates and screws until later in the Winter. I decided I'd rather walk with a bit of a limp over the Summer rather than being laid up again.

Being confined for long just about sent me over the edge. It was taking a bigger mental toll on me than I realized. So I'll enjoy what mobility I have for now.

The only issue I am still having is the possibility of getting an infection as the screw heads are rubbing through and causing sores. It limits what foot attire I can wear. Certain shoes causes more rubbing on the screw heads.

Well, I thought I had another issue yesterday. A couple of weeks ago, an idiot at the post tripped me and caused my ankle to twist. I had to just sit there for a couple of hours as it swelled and hurt like hell. I was furious with him and called him every name that existed. What kinda fucking idiot trips someone as a "joke", especially someone just recovering from a severe injury?

So I was back to having a noticeable limp that continued off and on since. Yesterday morning at work, I was simply walking and my ankle twisted and I was fortunate enough to be able to catch myself by grabbing onto the bar.

I was able to "walk if off" somewhat but it continued to ache like hell. By the time I got home, it was swollen worse than when the original incident happened. The pain and swelling was so bad that I considered the ER. Instead, I prepared an icepack and got out my hoard of pain pills that I've saved for my future episodes (this qualified) Took a few of them and slept great with my icepack wrapped around my foot.

Now the weirdest and probably the best news; when I awoke this morning, the pain is completely gone. First time ever. And the foot is 100% its normal size. Again, first time ever. I have a lot of numbness still but am hoping that's just the ice treatment.

I oh so know you all enjoy my misadventures so I thought I'd share my latest one. Thinking of getting a little pull behind wagon instead of actually carrying things. My coordination has went to total crap.

Thankfully, I believe my glasses actually stopped this latest event from being worse.

Hi Wolfie I would off added my observations earlier but was away far from easy web access.

Bone pain was the first problem I had with being positive. To cut a long story short I had a bone density scan around about 1993, and was diagnosed with osteophorosis. Far more advanced than what was expected in a mid 30,s man. I do have a skinny skeleton but still it was felt that the results where extreme , so it was notched up to one off my own reactions to being positive.

What we did not know at the time was I would be diagnosed with Hodgkins Lynphoma within the year.

The Bone scan approx 3 years later showed further derteriation. Ditto when the second round off chemo happened 10 years later.

Lost count off the fractures in toes/ fingers and palm off hands. Extreme low blood pressure another gift after the second batch off chemo and the my crazy neuropathy make Londons irregular paving stones treachourous.

6 years ago hospitalize with pcp i collapsed in the shpwer shattering length ways and crossways my ankle area , and have 3 pins in the area now helping the healing off the bone and making the foot look very differant to its twin.. Can be an area off Pain in the winter.

As low B/P is still an intermitant problem and I was always given to being a clumsy clot I now use a stick if the day indicates its use and/or my confidence levels are low.

I now take calcium D3 chewable 1000mg a dayProtelous 2grams mixed with water per day

The protelos replaced the usual treatment as that causes in a few cases the Jaw bone to die . This makes even a clean a right old palavour as its vital not to get any secondary infection in the jaw bone. Ones teeth drop out and break with alarming frequency too.

The dietatician commented that my childhood and adulthood diet was excellent. I do find it hard to eat when stressed.

Hope this can in some way be useful . I will try to answer any further questions you have.

michael

« Last Edit: July 27, 2013, 07:28:09 AM by Theyer »

Logged

"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Thanks Michael. I have another thread (or perhaps here) about my recent bone density test. It showed that I also have low levels for my age. I started the Sally Field treatment.

Even before my malicious injury, I was having issues with that leg only. I didn't even bother to post here that I had another failure of that foot about a week ago. It still acts like it's asleep but without any sensation at all.

I have already had an idea in the back of mind as I developed another symptom a while back. My right hand has also started loosing feeling but it trembles when that happens. I've had several people comment on it.

I do know that I've had some weirdness going on for a few years now that didn't have anything to do with other complications. I guess time will tell.

Also clicked on to "food that strengthens bone" and again it described my diet apart from nuts & seeds which for some reason are v.expensive in UK.

At the moment I am looking , 99% sure , at moving in London from a Ground floor flat to a flat that's got 3 sets off steps and stairs , I am aware that there have been times when I would not off considered the steps but am hoping that they will do me good and it will be some time off when they are a problem. Though am anxious about it.

Best wishesmichael

Logged

"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Wolfie, have you been checked out for Parkinson's? Some of the details you provided in your last post reminded me of a man I know who was eventually diagnosed with Parkinson's. It wouldn't hurt to have your doctor rule it out as a possible cause. You're pretty much the right age for early symptoms to be appearing.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Another potential thing you could do is some resistance training/weight lifting. No need to go overboard, but even some moderate excersize of that nature can help improve bone strength. I have read where older women managed to gain significant bone density that way.

True, and I can well imagine how frustrating that can be. The person I spoke of earlier (he's only an acquaintance of mine, but a family member of a friend) went for several years before getting a diagnosis. In the end he was given a drug used to treat Parkinson's and when that relieved his symptoms, they called it a diagnosis.

On a side note, that's why they still call it the practice of medicine. They keep having to practice until they (hopefully) get it right.

Hope you get to the bottom of this sooner rather than later. Not knowing is always the worst, eh? Hang in there.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I think part of the problem is that there are a couple of different issues going on. Obviously, the easily fractured bones and bone loss. But I started discussing the balance/falling issues quite a while ago. Escalators have been a source of anxiety for a while also.

My doc did suggest we try an anti-pd medication, but also indicates that we should see if the symptoms progress. I go decent amounts of time between incidents and that why we're hopeful it's not pd.

These symptoms all manifested after recovering from the Cyrptococcal Meningitis so the doc feels a lot of this can be explained by neurological damage done during that period. Mine was pretty severe which led to a bout of blindness/deafness. The swelling was bad enough that they considered drilling for oil to relieve pressure.

A lot of this is a result of my own idiotic decisions during a dark period and I guess I continue to reap what I sowed.

Another potential thing you could do is some resistance training/weight lifting. No need to go overboard, but even some moderate excersize of that nature can help improve bone strength. I have read where older women managed to gain significant bone density that way.

Talk to your doctor to see what they think . . .

I don't do strength training but I perform a lot of manual tasks. I do a lot of cardio exercises as I'm an avid cyclist.

I don't have any published reports to support my doctor's assertion, but he is seeing a huge increase in the number of long termers who are experiencing bone loss. He had a conversation with a colleague of his who now routinely performs BDS on all his older patients. He is concerned about the higher than average bone loss in this segment.

I guess we continue to be the guinea pigs for the advancement of living with this virus. We were the chosen ones, stricken in the mid 80's, barely out of highschool.